University of BC student Shantee Anaquod, who suffers from a rare autoimmune disorder called atypical haemolytic uremic syndrome, got what she wanted when BC’s health ministry decided to provide exceptional coverage for Soliris, meaning it will be provided in certain cases.
Lilia Zaharieva, a student from the University of Victoria who lives with cystic fibrosis (CF), was not so lucky. As reported in the Times Colonist
, the BC government has decided not to cover Orkambi, a $250,000-a-year drug designed to treat a strain of CF known as Double Delta F508.
“When I read further about the details under which [Soliris] was approved, which were the exact same conditions for which Orkambi has been denied to us, I was angry,” Zaharieva said.
Canada’s Common Drug Review Board and BC’s Drug Benefit Council, which evaluate medications for coverage under public plans, both recommended against covering Soliris and Orkambi. In each case, they cited the drug’s cost and inadequate evidence of its effectiveness.
But according to BC Health Minister Adrian Dix, the two cases are vastly different. BC’s decision to consider Soliris coverage after it was approved in Alberta, Manitoba, Quebec, Saskatchewan, and Ontario under exceptional circumstances. Meanwhile, Orkambi hasn’t been approved in any province or territory.
Dix further claimed that US-based Vertex Pharmaceuticals, the manufacturer of Orkambi, is attempting to use political pressure and lobbying for its own ends. “This company and others believe that they can go around the independent evidence-based process through political pressure,” he said. “They have to stop playing, quite frankly, games ... that affect the lives of real people who are waiting for decisions.”
On Nov. 13, the Common Drug Review Board altered its submission process, effectively letting Vertex additional clinical data to support the drug’s effectiveness. The firm has released a statement asking for an expedited review and negotiation process with the pan-Canadian Pharmaceutical Alliance, but the alliance has not agreed.
Dix said Orkambi coverage would cost BC’s PharmaCare system $85.5 million over the next three years. The drug, which earned Vertex $1 billion in revenue last year and is on track to bring in revenues of at least $1.1 billion, costs 30% more in Canada compared to its price in the UK.
“It's out of the question for someone like me," Zaharieva said.
She had asked Vertex to provide the drugs for her on compassionate grounds, but was denied. She managed to get an exceptional 12-week supply that will be exhausted by early January.
BC student, cut off from $250,000-a-year medication, seeks health minister’s help
BC refuses coverage for regulator-approved, life-saving cystic fibrosis drug
Two cases, almost the same story: a university student from BC urges the province to cover an exorbitantly priced drug, which was rejected by a panel of experts, because she says her life depends on it. The only difference was the ending.